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Meet Amy Wang - 832 Days Old, And Battling For Every Second Of Borrowed Time

Publication Date:

April 30, 2010

Source:

San Jose Mercury News

Author:

Bruce Newman

Professor Hank Greely, an expert on law and the biosciences, is quoted on the ethics of "savior siblings." Bruce Newman of the San Jose Mercury reports:

At the hospital where Ning Liu was watching over her newborn baby, a specialist in genetics entered the room and planted her feet. "Your child will not have a normal life span," she said flatly. Liu looked down at her daughter, still only three weeks old, and began to weep.

...

Prolonging Amy's life will require a Herculean effort that involves complex ethical choices and enormous expense. Last November, Liu decided to begin an exhausting process called in vitro fertilization with pre-implantation genetic diagnosis (IVF/PGD), which requires frequent hormone injections and costs close to $20,000 for each attempt. The goal is a designer embryo that does not carry the Fanconi gene, but does produce a marrow match. They are now on their third round of the procedure.

"Bone marrow transplant is the only treatment to save her life," says Xiaoqing. A bone marrow registry search failed to turn up a suitable donor, which meant the clock had begun ticking on how long Amy has to live.

...

The only plausible option is what medical ethicists have dubbed a "savior sibling."

There was a 25 percent chance that any child the couple had would be born with Fanconi anemia. But without a savior sibling — born with an umbilical cord rich with marrow cells — Amy had zero chance of survival. "We want to have a child," Liu says, "but we also need a sibling donor to save her."

That baby — bioengineered by implanting what Liu refers to as a "golden embryo" — would likely extend Amy's life by years. But creating a life in order to harvest tissue has sometimes raised troubling ethical questions. "There is nothing more desperate than a desperate parent," says Hank Greely, director of Stanford's Center for Law and the Biosciences. "So you have to worry about people in that situation doing desperate things."

Greely, who doesn't know Amy's parents, believes that with proper safeguards, IVF/PGD is a good thing. "The potential downside is that you're creating a baby not because you want a baby, but because you want to use the second child as a spare parts repository for the first," he says. "What happens if the first child dies? Will that color the parents' relationship with the second child?"